Innovative patient and carer partnership in creating trustworthy guidelines, from protocol to publication: a case study of BMJ Rapid Recommendations

Session: 

Oral session: Patient or healthcare consumers involvement and shared decision-making (2)

Date: 

Wednesday 23 October 2019 - 11:00 to 12:30

Location: 

All authors in correct order:

Lytvyn L1, Siemieniuk R1, Macdonald H2, Price A2, Lyddiatt A3, Brandt L4, Heen AF4, Gordon G1, Agoritsas T5, Vandvik PO4
1 McMaster University, Canada
2 BMJ, UK
3 Cochrane Consumers, Canada
4 University of Oslo, Norway
5 University of Geneva, Switzerland
Presenting author and contact person

Presenting author:

Lyubov Lytvyn

Contact person:

Abstract text
Background: BMJ Rapid Recommendations (RapidRecs) are trustworthy guidelines published in the BMJ and MAGICapp.org in response to practice-changing evidence. RapidRecs are developed by international panels of un-conflicted clinicians, patients and carers, and methodologists.

Objectives: we sought to determine the feasibility and impact of patient/carer partnership at each step of guideline development.

Methods: for each RapidRec, we recruit patient/carer partners from consumer organizations, panel member referrals, and online platforms. Partners receive an invitation, conflict of interest form, and phone or videoconference call describing the RapidRecs project, expected commitment, and timelines. Those who participate:
1) provide feedback on the protocol of the systematic review informing the guideline;
2) identify practical issues for shared decision making;
3) engage in an education session before panel deliberations;
4) participate in deliberation teleconferences; and
5) edit draft recommendations and manuscript as co-authors.

We will conduct interviews with patient/carer partners to describe their experience, and identify strengths and weaknesses of our approach. We will review impact by reporting unique contributions made by patient/carer partners for each RapidRec.

Results: from 15 guidelines to date, we have had 42 patient/carer partners, from 13 countries. Partners were recruited from general consumer organizations (N = 8), health condition-specific organisations (N = 11), TaskExchange (N = 9), Cochrane Consumers (N = 3), and referrals (N = 11). Key impacts thus far of patient/carer panel members were ensuring patient-important outcomes and subgroups are considered, ensuring outcomes are valued appropriately, identifying practical issues for patients facing treatment decisions, maintaining patient-centredness in guideline deliberations, improving language used in guideline manuscripts, and disseminating published guidelines. Preliminary feedback from patient/carer partners has been positive regarding process and contributions. Limitations are that RapidRecs panels only include English speakers, and the rapid guideline approach may not generalise to complex guidelines. Areas of further exploration include improving diversity and inclusiveness of guideline panel members, disseminating and scaling up methods for other guidelines, maximising patient/carer involvement without excessive burden, and documenting challenges (e.g. recruitment, education) and resources required.

Conclusions: we provide a proof-of-concept that meaningful patient partnership is achievable, producing more trustworthy, relevant, and patient-centred guidelines for shared decision making.

Patient or healthcare consumer involvement: patients and caregivers are involved in guideline panels as full co-authors. Two co-authors of this abstract helped develop the initial partnership strategy, and have also participated in a RapidRecs guideline panel as patient partners.